As a person who has multiple sclerosis, I read with great interest “STAT”, an article by Maria Bustillos that appeared recently on the Longreads website. (Click here to access the article). Bustillos describes her very unpleasant experiences when her 24-year-old daughter was diagnosed with MS. She also advances the hypothesis that animal fats are an important and overlooked factor in the cause and progression of MS.
If Bustillos is right, then removing animal fats from your diet should alleviate – or even eliminate – many symptoms of MS. I hope she’s right. Controlling MS through diet would be much simpler and less costly than many other alternatives. However, I have my doubts and want to summarize them here.
By way of background, I am a sixty-something Caucasian male who was diagnosed with MS in 2008. I have the remitting-relapsing form of the disease and have not had a relapse for almost eight years. I am also an active volunteer for the National MS Society (NMSS). I participate in their fundraisers – Bike MS, Walk MS, etc. – and I currently serve on the Board of Trustees for the Colorado-Wyoming chapter. It’s worth noting that the opinions stated here are mine alone.
The Animal Fats Hypothesis
Bustillos proposes that animal fats are a significant factor in causing MS and/or exacerbating its symptoms. She writes, “Animal fats appear to play a significant role in making MS patients sicker; fish oils help keep them healthier.” Based on this analysis, Bustillos recommends a vegan-plus-fish diet to manage MS. Let’s call this the animal fats hypothesis or AF for short.
While the AF hypothesis is useful, many other hypotheses about MS exist. One that I find especially intriguing is what I’ll call the clostridium hypothesis as proposed by Dr. Timothy Vartanian and his colleagues at the Weill Cornell Medical College.
The clostridium hypothesis derives from research conducted in the Faroe Islands, an isolated chain in the north Atlantic. Prior to World War II, the inhabitants of the Faroe Islands – the Faroese — had never recorded a case of MS. During World War II, the British established a naval resupply station in the islands and brought in scores of troops and pack animals, especially mules. The first recorded case of MS occurred in 1943 and heralded the beginning of an MS epidemic. Researchers have documented three successive epidemic waves since then. (Click here for more detail).
What changed in the Faroe Islands to enable the rise of MS? Dr. Vartanian and his colleagues suspect – but certainly haven’t proven – that the cause is a specialized subtype of the bacterium clostridium perfringens. The subtype produces the epsilon toxin, which can degrade the myelin sheath that protects the nervous system. Degraded myelin is a hallmark of MS.
Clostridium is associated with grazing animals and is often found in the soil where they feed. Vartanian’s team has found the epsilon-producing form of clostridium in soil samples from the Faroe Islands and also in stool samples of people who have MS – both in the Faroes and elsewhere. Dr. Vartanian and his team suspect that British pack animals introduced clostridium perfringens to the Faroe Islands and created an environmental trigger for MS. There’s no conclusive proof of this hypothesis but clostridium is certainly a bacterium of interest.
MS has traditionally been viewed as an autoimmune disease. For unknown reasons, the immune system attacks the body and degrades myelin. The clostridium hypothesis suggests that the immune system is reacting to a bacterial infection. It’s a very different model and potentially yields very different therapies.
Could a change in diet have caused the eruption of MS in the Faroe Islands? It’s possible but I haven’t found any evidence that the Faroese changed their diet substantially during or after World War II.
I’ve highlighted the clostridium hypothesis because I think it’s intriguing. But there are many other hypotheses as well. One, for instance, suggests that MS is related to a deficiency in Vitamin D. This is based on the observation that the incidence of MS is higher the farther one is from the equator. Presumably one gets less Vitamin D from the sun in far northern or southern latitudes. (Click here for more detail). My point is that there are many hypotheses and we shouldn’t consider the AF hypothesis in isolation. We can compare hypotheses to determine which one explains our observations best.
Norway and Colorado
Bustillo’s argument relies heavily on a study of the incidence of MS in post-war Norway. The study, by the neurologist Roy Swank, was published in 1952 in The New England Journal of Medicine. As Bustillos writes, Swank found that “…the incidence of MS in remote, mountainous dairy-farming regions, where there was a high consumption of beef and dairy products, was eight times higher than on the coast, where the predominant diet was based on fish.”
Bustillos and Swank conclude that diet was the causal factor behind these differences. That’s certainly possible but I’m not convinced. The evidence I would point to comes from my home state of Colorado, which also has an unusually high incidence of MS. In Colorado, the incidence of MS is about 182 cases per 100,000 people. In the United States as a whole, the ratio is 135 cases per 100,000 people.
Why the difference? Perhaps it’s Colorado’s altitude. That would fit nicely with the Norwegian study, which found that highlanders contracted the disease more frequently than coastal dwellers. Or perhaps it’s the fact that Colorado is the center of a large livestock industry. We have millions of grazing animals and I suspect our soil is chockfull of clostridium. This would lend credence to the clostridium hypothesis and the Faroe Island experience.
I can’t think of any dietary differences between Colorado and the rest of the nation that would account for the differences. As far as I can tell, the Colorado example doesn’t support the animal fats hypothesis — but doesn’t refute it either.
As Bustillos points out, Swank did considerable research on the vegan-plus-fish diet. Indeed, it’s often referred to as the Swank diet and is promoted by the Swank MS Foundation. (Click here for more detail). Bustillos claims that the National MS Society does not provide information on this diet. That’s not quite right. Here’s an article from 2008 on the NMSS website that summarizes a variety of diets, including Swank’s.
Beef Consumption and MS
If the AF hypothesis is correct, one surmises that there should be a correlation between beef consumption and the prevalence of MS. But I can’t find such a correlation in the available data.
Here, for instance, are the top five countries in terms of beef consumption per capita.
Hong Kong 123.51 pounds per capita per year
(Click here for the full table of 61 countries)
On average, the worldwide prevalence of MS is 30 cases per 100,000 people. Yet Argentina has only 18 cases per 100,000 people. Uruguay has 26. Brasil has 15. The USA has 135. (I couldn’t find data on MS in Hong Kong).
At the other end of the spectrum, Sweden and Norway don’t even rank in the top 61 countries in terms of beef consumption. Yet Norway has 160 MS cases per 100,000 people and Sweden has 189.
Based on the animal fats hypothesis, Bustillos concludes that a vegan-plus-fish diet is a good way – perhaps the best way – to manage MS. Let’s remember that other diets have also been proposed to manage MS.
In a popular YouTube video, for instance, Dr. Terry Wahls attributes her success in managing her MS symptoms to a diet rich in leafy greens, colored fruits and vegetables, seaweed, meat from grass-fed animals, and organ meats. She also stresses the need to reduce sugar and gluten as well as the need to reduce stress. Dr. Wahls’ MS symptoms were severe enough that she could no longer walk and was chronically fatigued. When she switched to her new regimen, she regained her energy and her ability to walk.
What intrigues me about Dr. Wahl’s diet is that it includes meat. In fact, her diet is quite similar to the popular paleo diet. Numerous testimonials suggest the paleo diet can help manage MS. (See here, here, and here, for instance).
All of these diets include meat, which a vegan-plus-fish diet excludes. If the AF hypothesis is correct, it seems that the paleo diet should exacerbate MS symptoms rather than alleviate them. It seems that either the vegan-plus-fish diet or the paleo diet might work to alleviate MS symptoms. But I’m hard pressed to explain how both could work. But perhaps we’ll soon find out as the National MS Society recently announced new research into both the Wahls and Swank diets. In cooperation with the Univeristy of Iowa, NMSS is investing $1 million in a 36 week clinical trial to measure the effectiveness of “…a low saturated fat diet (Swank diet) or a modified paleolithic diet (Wahls diet)”. Stay tuned. (Click here for more information).
Evidence Based Medicine
Bustillos writes a long critique of evidence-based medicine or EBM. She clearly believes that we should not accept EBM as the be-all and end-all of medical research. I agree. So does the medical establishment.
For some years now, medical researchers have used a hierarchy of evidence that includes at least four levels. The most stringent level of evidence – Level I – involves randomized, double blind experiments that are replicated in multiple locations. This is the gold standard of evidence-based medicine.
The least stringent level of evidence – Level IV – includes testimony from a panel of experts. Ideally, the panel will include experts from multiple institutions and represent multiple disciplines. The panel reviews the existing evidence and presents it in a public forum where interested parties can question their findings.
Based on what Bustillos writes, it appears that the animal fats hypothesis does not yet rise to the Level IV standard of evidence. Perhaps a useful next step for AF proponents — while we await the results of the NMSS/Iowa study — would be to organize a panel of experts and present their findings in public.
Bustillos offers sterling character references for researchers who agree with the AF hypothesis. She describes them as “distinguished”, “eminent”, “prominent”, and “highly qualified”.
I’m sure she’s right. I would similarly like to offer sterling character references for the neurologists, biologists, researchers, and clinicians that I have met in the MS community. Many of them have close personal connections to MS. Indeed, many of them have the disease themselves. On the whole, I find them to be highly professional, creative, and open-minded. They’re looking for answers and they’ll pursue any clue that seems promising.
I made my career in the computing industry and I recognize the Not Invented Here syndrome when I see it. I don’t see it in the MS community.
There are currently 14 FDA-approved disease modifying therapies (DMTs). None of these is a magic bullet that stops or reverses the course of the disease. However, the DMTs can slow the progression of the disease and produce useful outcomes in both the short term and long term.
Generally, the sooner one begins treatment with DMTs, the better off they are in the long run. Mark Freedman’s research, published in the journal Neurology (click here), suggests that, “…that early optimal treatment aimed at reducing disease activity can improve longer-term outcomes by delaying disease progression.”
Like Bustillos, I believe that good diet is essential to good health. I’m intrigued by the vegan-plus-fish diet. Yet, I’ve managed my MS symptoms successfully without it.
I eat a healthy diet but it’s not nearly as strict as vegan-plus-fish – or paleo for that matter. I follow the recommendations of various heath organizations like the American Heart Association. I don’t each much sugar but I don’t worry too much about gluten or dairy. I eat a lot of fish and vegetables but I also toss in a hamburger every now and then. Why? Because I believe that occasional pleasures are essential to good health as well.
I also do a lot of yoga. Perhaps that’s what makes the difference for me. Perhaps we should research yoga’s impact on MS more thoroughly. I think we could build a strong case for yoga – perhaps equally as strong as the case that Bustillos presents for the AF hypothesis.
The Newly Diagnosed Experience
Bustillos writes about her experiences in the immediate aftermath of her daughter’s diagnosis. By and large, she describes it as a nightmarish period in her life.
My own baptism into the MS world was more benign. The first thing my doctors told me was that there’s a lot that we don’t know. I accepted that and did a lot of research on my own. I discovered various therapies including the paleo diet, yoga, massage, and acupuncture. I adopted those that made most sense to me.
I’m sorry that Bustillos and her daughter had a negative experience. But I don’t think that’s relevant to whether we accept or reject the AF hypothesis. I think we should share as much information as we can about as many therapies as possible. But I don’t think we should promote the vegan-plus-fish diet as the one true solution. There’s just not enough evidence.
I’m interested in the vegan-plus-fish diet but not yet ready to convert. I’m well versed in Pascal’s Wager and I don’t require Level I evidence to pursue a potential therapy. But I would like to see some evidence that’s at least at Level IV. I have an open mind here but I need to know more.
I hope that Bustillos — and others who are intrigued by dietary therapies – will also keep an open mind about disease modifying therapies. The evidence is quite clear that it’s better to start DMT therapies earlier rather than later. It’s Level I evidence and it’s quite convincing.
I worry about cause and effect. If you get them backwards, you wind up chasing your tail. While you’re at it, you can create all kinds of havoc.
Take MS (please). We have long thought of multiple sclerosis as an autoimmune disease. The immune system interprets myelin – the fatty sheath around our nerves – as a threat and attacks it. As it eats away the myelin, it also impairs our ability to send signals from our brain to our limbs. The end result is often spasticity or even paralysis.
We don’t know the cause but the effect is clearly the malfunctioning immune system. Or maybe not. Some recent research suggests that a bacterium may be involved. It may be that the immune system is reacting appropriately to an infection. The myelin is simply an innocent bystander, collateral damage in the antibacterial attack.
The bacterium involved is a weird little thing. It’s difficult to spot. But it’s especially difficult to spot if you’re not looking for it. We may have gotten cause and effect reversed and been looking for a cure in all the wrong places. If so, it’s a failure of imagination as much as a failure of research. (Note that the bacterial findings are very preliminary, so let’s continue to keep our imaginations open).
Here’s another example: obsessive compulsive disorder. In a recent article, Claire Gillan argues that we may have gotten cause and effect reversed. She summarizes her thesis in two simple sentences: “Everybody knows that thoughts cause actions which cause habits. What if this is the wrong way round?”
As Gillan notes, we’ve always assumed that OCD behaviors were the effect. It seemed obvious that the cause was irrational thinking and, especially, fear. We’re afraid of germs and, therefore, we wash our hands obsessively. We’re afraid of breaking our mother’s back and, therefore, we avoid cracks in the sidewalk. Sometimes our fears are rooted in reality. At other times, they’re completely delusional. Whether real or delusional, however, we’ve always assumed that our fears caused our behavior, not the other way round.
In her research on OCD behavior, Gillan has made some surprising discoveries. When she induced new habits in volunteers, she found that people with OCD change their beliefs to explain the new habit. In other words, behavior is the cause and belief is the effect.
Traditional therapies for OCD have sought to address the fear. They aimed to change the way people with OCD think. But perhaps traditional therapists need to change their own thinking. Perhaps by changing the behaviors of people with OCD, their thinking would (fairly naturally) change on its own.
This is, of course, quite similar to the idea of confabulation. With confabulation, we make up stories to explain the world around us. It gives us a sense of control. With OCD – if Gillan is right – we make up stories to explain our own behavior. This, too, gives us a sense of control.
Now, if we could just get cause and effect straight, perhaps we really would have some control.
When we discuss brand extensions in my branding class, we like to look at both successes and failures. Successful brand extensions include Honda lawn mowers, Hershey’s chocolate milk, Jeep strollers, and Dove shampoo. Failures include Harley-Davidson wine coolers, Kleenex diapers, and Bic perfumes.
Perhaps the most notable failure that we discussed this quarter was the Evian Water Bra. Yes, Evian actually designed a bra that you can fill with water – Evian, one supposes. Why Evian did this, no one seems to know. The company has been skewered on many branding and marketing websites. Everyone who can write a snarky sentence seems to have done so. When I first saw the bra, I thought, “What were they thinking?”
Then I considered mashup thinking and multiple sclerosis. It may seem like an odd combination but, well … that’s the point of mashups. As Frans Johansson notes, the best innovations come from the intersection of very different ideas.
People with MS don’t process heat very well. They become overheated quite easily. They often need to wear cooling garments to disperse the heat and keep their MS symptoms under control. And those cooling garments are often filled with … water.
My friend, Cathey Riechers, maintains an online store to sell cooling vests and similar garments. Roughly three-quarters of those who live with MS are women, so many of the garments are in women’s shapes and sizes.
Cooling garments work well but – let’s be honest – they’re not very fashionable. They’re like orthopedic shoes. They’re helpful but you wouldn’t want to wear them to the prom.
I’ve occasionally wondered why we couldn’t design fashionable cooling garments. As I pondered the Evian water bra, it struck me that Evian has done exactly that. Only they called it a water bra. That’s bad positioning. Let’s re-position it as a fashionable cooling garment for women who have MS. There’s a market there. And perhaps it’s the tip of an iceberg … perhaps there are many other women who don’t have MS but still would like to stay cool.
Here’s my proposal. Let’s ask Evian if they will re-position their product and allow it to be sold as a cooling garment. This could be a huge PR bonanza for Evian. They can take something that was widely mocked and convert into something that helps millions of women. It was a product searching for a problem to solve. Now we’ve found the problem.
If Evian will do that, I’m sure that we can find distribution and sales outlets throughout the MS community worldwide. We probably can’t pay much for the licensing but we can sure talk up Evian and buy lots of Evian product.
So, what do you think Evian? How about it?